The Moral of the Case of Charlie Gard: Give Dying Patients Experimental Treatment … Early

The tragic case of Charlie Gard has captured the imagination of social media, the Pope and President Trump. All of Charlie’s legal options appear to have been exhausted so, despite the tsunami of opinion, it looks like treatment will be withdrawn, barring some act of God or other authority.

I argued back in April  and then in May that it would be reasonable to give Charlie a trial of experimental treatment for a fixed period, say 6 months. The treatment was not going to make him worse and there was a non-zero possibility of some improvement. At the end of 6 months, his progress could have been reviewed and a decision then made to withdraw treatment if no significant progress had been made. I argued that we can’t be certain that his life is not worth living and we can’t be certain treatment will lead to zero improvement. I argued that the costs – 6 months of sedation and analgesia, with limited amounts of suffering associated with medical procedures, was arguably worth taking. That course was not taken.

Worst of All Possible Worlds

Charlie was born in September 2016. He was admitted to hospital in October. By January 2017, his mother had identified an experimental treatment (nucleoside replacement therapy) available in the US.

By April 2017, the Gards had crowd-sourced £1.2million to take Charlie to the US for experimental therapy. However, a judge ruled life is not in his best interests. He must die. Numerous appeals were lodged, and lost, all the way up to the European Court of Human Rights. Now the Pope and President Trump have weighed in.

It is now over 6 months since Connie Yates , Charlie’s mother, identified and petitioned for an experimental treatment. During the whole of that time, Charlie has been ventilated in intensive care, receiving no therapy offering any prospect of improvement. If treatment had been started back in January, immediately, we would now have evidence presentable to the family, courts, media and doctors of whether it was yielding any improvement, or not.

Unless the treatment itself would have serious side-effects, or was expensive, there is no downside to it being provided, especially when Charlie is being kept alive anyway. Since the parents had raised funds to provide it themselves, there is no justice or resource allocation issue.

Not providing the experimental treatment at the outset is the very worst situation for everyone:

1. Charlie has been kept alive since January, suffering the alleged harms of intensive care, without receiving an intervention that might lead to an improvement.
2. His parents have had to watch their child being kept alive, without receiving the treatment they hope will have some effect.
3. Doctors have had to keep alive a child for 6 months whom they believe is suffering and should die with dignity.
4. Courts and the family have been denied real time real life information about whether the intervention does have any effect. They have been forced to make non-evidence based decisions.

The reasonable course of action, given the time taken by the court process, would have been to immediately start nucleoside replacement therapy at the parents’ cost (if justice precludes stricken NHS funds being used for it), while petitions to court were made to withdraw active treatment. That would have meant we would have more information about what 6 months of therapy might be able to achieve, and Charlie would have been given his fair go. It would be a better position to be in for all concerned.

Experimental Therapies

It is important to remember that many advances have been made (including the first anti-leukemia drugs) through experiments.

In the era of personalised medicine where patients have access to unlabelled drugs yet to undergo the rigours of Phased trials, it is becoming increasingly important to broaden our acceptance of a patients ability and need to trial drugs and therapies earlier in the trial process. In many ways, the success of many therapies has been one of experimental trial and error.

As an example, think of the advent of leukaemia therapy in paediatric patients. Dr Sidney Farber, the famous pathologist whose memory is now acknowledged by the successful, international Dana-Farber institute, has long been heralded as providing the first successful cure in childhood acute lymphoblastic leukaemia (ALL) What is forgotten in this case is that Sidney Farber initially used experimental therapy. Building on an observation from a doctor treating anaemia with folic acid, he presumed folic acid might be a good therapy for ALL. His first treatment caused acceleration of disease and multiple patients died quickly from uncontrolled leukaemia. However, this observation lead Dr Farber to try the reverse, an anti-folic acid medication. Again, in an experimental, non evidence based practice, he trialled his new therapy. The result was the beginning of a cure for ALL and medications that are the mainstay of therapy, still, today.

The judicial system relies heavily upon the expert medical opinion, which in turn is based upon evidence based practice. In the case of Charlie Gard, the treatment in the US, which the parents are seeking has been deemed experimental therapy with a low chance of providing benefit, to provide cure. However, this is not absolute. As exemplified by the case of ALL, experimental therapy, in rare cases, can provide the advances that one day underpin curative therapy.*

There are of course limits to aggressively offering experimental treatment:

1. Side effects of treatment may make it highly likely not to be in the individual’s interests. This does not appear to be an issue with nucleoside replacement.
2. It is expensive and would deny other patients their slice of the limited health care pie. This does not apply as Charlie’s parents had raised funds independently.

Why wasn’t experimental therapy started immediately? It is difficult to speculate without knowing the facts but possibilities include:

1. Doctors were confident that life and treatment were not in Charlie’s interests and the case would be quickly over. That ignores the social media effect, and the legal paths that are available to parents in this situation.
2. There was a reluctance to provide treatment to one patient when it could not be provided to all. This is a version of levelling down egalitarianism that I believe is morally wrong and stifles innovation.
3. Once started, it would be difficult to stop. Doctors and ordinary people are attracted to the acts-omissions distinction which says that we are more responsible for the consequences of our acts than our omissions. Thus it is easier to withhold medical treatment than to withdraw it. While this is sociologically and psychologically true, there is no good philosophical justification for holding that acts are more morally blameworthy than omission. That is, there is no moral distinction acts and omissions, between withholding and withdrawing life sustaining medical treatment.

Moral of the Story

This case might be a very good example of the detrimental consequences of the act-omission distinction. Because doctors and others are more reluctant to withdraw medical treatment than withhold treatment, often a trial of treatment is not commenced (because of a fear it will have to continue indefinitely). This has disastrous consequences in denying people a chance and also failing to gather more accurate information about prognosis. The best course of action in this case would have been to commence experimental treatment while Charlie was anyway being ventilated during various court processes.

There is an important lesson to be drawn. Where there is contention about an experimental treatment that is requested by a dying or severely ill patient (or their representative), it should be provided with a plan for active withdrawal. Trial of treatment is sometimes better than no treatment.

Of course, if the treatment has side effects which clearly outweigh the expected benefit or cannot be offered because of distributive justice considerations, then it ought not be provided.

For the future, we should consider being more aggressive about trials of experimental treatment where there are no other good options- with an ordered plan for withdrawal.

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* Thanks to Rachel Conyers for these points